I thought I’d try something new today and combine two completely different things into the one post.
Above: From left to right – Daffy, Ola, Woodroffe, Seli, Diamond, Pearl, Godfrey, Zaruma.
Below: From left to right – the ‘End of Life Requests’ form that I have been asked to fill out and return to the nursing lodge. I am supposed to discuss this with Anthony I think but not sure if I can. Anyway, I haven’t been able to find a pen.
Against all advice from friends and family, and against my own decision not to bring Anthony home anymore, I did so anyway today.
I couldn’t not. I couldn’t not.
During the drive home Anthony was utterly silent. It then took awhile to get him from the car onto the front veranda, even with the new walker the nursing lodge let me borrow.
It was sunny to begin with, so I brought Anthony a drink, sat with him for awhile, then went inside to heat up the chicken soup I’d made him. When it got cloudy outside, I had to bring Anthony into the kitchen which took ages because his meds hadn’t kicked in. I put the heater on because he gets so cold all the time. All of this was silent except for me saying, “1, 2. 3” to help him walk.
I served Anthony the soup but couldn’t eat any myself because I was feeling weirdly nauseous, and terrified I wouldn’t be able to get him back from inside the house to the car to take him back to the nursing lodge in time for his next meds, and in time to pick Ming up from his music school.
The day was filled to the brim with silence. I kept saying, “Why don’t you talk to me anymore?” and Anthony kept trying to, but couldn’t.
Little snatches of conversation happened, but I had to instigate them all because Anthony seems to have forgotten how to converse.
Anthony only uttered one beautiful sentence as I was getting him into the car to go back the nursing lodge, and that was about his guinnea fowl who seem to congregate close to him when he is home, even when he is silent; they seem to sense his presence. “Look at them, Jules,” he said, with his new quarter-smile.
They were our first birds and they are very noisy, just like Anthony used to be – loud and laughing and utterly lovable.
Otherwise, it was all pretty quiet today because Anthony’s silence was deafening.
I remember the day that Parkinson’s Disease first snarled its way into our lives. We were going to the doctor’s for a regular appointment for skin cancers on Anthony’s face and I was extremely annoyed that he wouldn’t drive himself into town (this is nearly a decade ago).
Me: Why the hell won’t you go anywhere by yourself anymore? I feel like a chauffer. It’s my day off and I wanted to do other stuff and now I’m stuck driving you into the doctor’s because you were stupid enough to not wear a hat all your life.
Anthony: I just like your company.
Me: Well, I like your company too but I just don’t get why you always want me to drive and be with you every time you have to go somewhere. I don’t get it! I’m sick of it!
Anthony: Jules, I don’t think I can drive anymore.
Me: What? Since when? What are you talking about? Of course you can drive!
Anthony: Something’s gone wrong with my reflexes so I need you to drive me.
Me: But you’re not that old yet, Ants. Come on, you can drive. What is it? Have you lost your confidence or what?
Anthony: Ever since that time we went to Perth and I went up a one-way street and you screamed – remember?
Me: Oh, so it’s my fault is it – that’s just great – thanks for the accolade.
Anthony: Jules, please don’t cry.
Me: Do you think something else is wrong with you then?
Anthony: Yes.
An hour later, our doctor determined that Anthony probably had Parkinson’s Disease and I swallowed my snarl.
Yes, I am over-posting, sorry. I am wide awake with anxiety for a friend who has been in a car accident and for the people in Colorado. I don’t know what to say about any of this so I revert to talking turkey trivia….
In the forefront, you can see Bubble approaching me for a hug.
Now, Bubble is right next to me on the table, looking very huggable.
Bubble was rather cute when he was little.
It was Anthony who wanted turkeys and here is a picture of our first Bubble who didn’t survive. And, a few months later, Anthony began living in the nursing lodge.
Just outside the back veranda door there are two peacocks wishing I would take better photographs of them
Just outside the back veranda door there is a golden pheasant wanting bread
Just outside the back veranda door, beyond the ancient fig trees, there is a car and a driveway and the possibility of a road that will lead me to the nursing lodge where my husband waits for me constantly
a road that suddenly became one-way
a road that can’t bring him home
a road that reverted from tar to gravel to dirt
a road that ripped our smiles apart and gave us a new jigsaw that is too difficult to figure out
a road that, today, I cannot travel.
This word keeps launching itself at me like an army of arrows because it knows how to multiply itself.
Sometimes it comes from other people but mostly it comes from myself. It is an absolutely horrible word, one I never inflict on others.
I loathe this word and wish it could be eradicated from the English dictionary so that I didn’t have to feel its continual prongs, taunts and its arrogance.
There are lots of other words that compete with this one but they are often shouted out of the picture because this word wants to be the boss.
This word knows its finger-freezing power; this word delights in disseminating misery and guilt; this word bides its time and then leaps from unexpected places and doesn’t unclench its jaws until it has extracted blood.
If you respond to this word, sometimes it will lick your blood up, swallow it and give you a kiss of approval; sometimes it will leave you alone for awhile so that you can torture yourself the way it wants you to.
The only way of escaping this word is by ignoring it. Eventually it will give up.
And what is this word?
SHOULD
I was trying to diagnose my state of mind/heart the other day and came up with the phrase ‘prolonged grief’ and, until I googled it, I thought I was the originator of this phrase. Not so! I found the following article very interesting but not particularly useful when it comes to the prolonged grief that so many people suffer before the loss of death.
It seems that Daffy’s Dotty has, indeed, disappeared and she has probably been killed by that fox. His daily quacking has become hoarse with grief.
Lately, I have caught myself (guiltily) wondering about this question and its many off-shoots. Nevertheless, it is probably a rather controversial question to ask, so I apologize if it offends anybody but I wanted to ‘put it out there’ to see what other people think.
A few weeks ago I discussed the hesitant beginnings of this question with Anthony who now knows that dementia is creeping up on him. He knows because it has been mentioned by various professionals in front of him; by me, carefully; and by Ming frankly (“Dad, you’re losing the plot!”)
PDD is an acronym for Parkinson’s Disease Dementia but this condition is not as well known as Alzheimer’s Disease despite the fact that its symptoms are so similar – ie. loss of short-term memory, loss of ability to remember how to do normal activities (walking, speaking, ablutions, eating etc.) In the final stages of Parkinson’s Disease, which is where Anthony is in this strange continuum, the dementia usually begins to kick in.
So far, the dementia has been gentle, but unpredictable and, as I said to Anthony yesterday, “Mostly you are lucid but sometimes you are gaga”, and he agreed. It reminded me of all those years ago when I was looking after his mother and her extreme distress at becoming forgetful and confused. I have never forgotten her tears that day because she was not the crying type; she was stoic. Anthony is like that too, but I have noticed that, when lucid, he is sad and, when gaga, he isn’t sad.
A few weeks ago, I wanted to find a miracle cure for the encroaching dementia but now (apart from the fact that there is no miracle cure), I wonder if the hastening of dementia would be a blessing in disguise.
I don’t know what to wish for anymore.
Any thoughts?
I am laughing and chatting and listening to music and watching the birds and giving Ming a hug and cooking dinner and turning the television on and washing the dishes and changing the sheets and blogging and reading a good book and checking facebook and deciding whether to give the emus half a cabbage or a whole one and half-noticing the sunset and hoping the phone won’t ring and hoping the phone will ring and making a shopping list and trying to find my diary and paying bills and answering emails and making a to-do list and feeling glad about some things and sad about other things and thinking about pruning the roses and baking bread with the flour I bought a few months ago that probably has weevils in it and wondering whether to have a coffee or a tea or a diet coke or a beer and feeling hungry and feeling sick and wanting to go to bed and wanting to wake up and cleaning out my office and organizing my paperwork and resigning from my job and loving my friends and loving my family and loving the dogs and wishing I had continued to write columns for magazines and wishing I had written more than one book by now and and hating getting older and loving getting older and wondering what it would be like if we had more than one kid and remembering how I nearly got frostbite in Canada and wishing I had rung Tulia in PNG before he forgot about me and wishing I remembered everybody’s birthdays and wishing we had more money and laughing and chatting and helping Ming with lyrics and loving grammar and being amazed that he has the fireplace lit and feeling glad that it isn’t going to be as cold tonight as it was last night and wishing the day were night and the night were day and dreaming about eating fairy floss and Disneyland and sunburned shoulders and feeding the squirrels and wanting to find the keys to wind all of Anthony’s clocks and opening my mouth to say something to Ming but he is busy and wondering how my niece’s preparations for her wedding are going in Scotland and thinking it might not work to take Jack the Irish terrier into the nursing lodge and wishing the kitchen staff would bend the rules and give me scraps for the chooks and delighting in the anticipation of fresh eggs and thinking how lucky I am to live in such a beautiful place and wondering why good people suffer and reminding Ming to set the alarm so he will get up to help milk the cows for the neighbours and finding the library book I lost several months ago and laughing because I forgot to remember to do whatever it was and then ….
…. it hits me like a car crash – the grinding metal of grief and I stop breathing, terrified that there might be another slamming of brakes, swerving of lights, skidding of tyres but, instead, there is silence, so I creep into the bathroom and lock the door and put the noisy fan on so that I can muffle into my collar the horrible sounds coming from throat so that Ming won’t hear me or worry about me or get impatient with me or wonder where his dinner is and, eventually ….
….I come out of the bathroom and into the light-filled, Aga-warmed kitchen and continue to stir the stew I have made with fresh vegetables and meat and Ming comes into the kitchen excited about his new lyrics and a new tune and wants me to listen and, once again, I am laughing and talking and listening to music, knowing that by now Anthony will be asleep.
Well so much for the red wine idea. When I went into the nursing lodge this afternoon I could see that it wasn’t going to work today. I walked in through the entrance doors to the unlocked side of the section where Anthony is, past the foyer and into the big room where various activities happen, and stopped short when I saw that there was, indeed, an activity going on.
I stepped back and apologized for my intrusion into what I found out later was an occupational therapy session of skittles (like bowls), but I was immediately welcomed in by a combination of residents, carers and staff. But I hesitated, as my eyes searched the small crowd of people sitting around the ‘bowling alley’, looking for Anthony and, as I stood at the doorway, and the woman in charge began to finish the session, I saw him in the far corner, sitting in one of the chairs on the opposite side of the room. He didn’t see me and, as I waited for the bowling session to evolve into afternoon tea, and those residents who could walk vacated their chairs to sit at a long table that had been set up, I watched him for a few moments before rushing up to kiss him and help him get to the table.
In those few moments I saw what other people see – a big man, slumped in a chair with a look of such blankness on his face that, if you didn’t know him, you would assume he had utterly lost the plot. You would walk past him assuming he was beyond communicating with. You might give him a glance of pity and keep walking, not noticing that he turned his head just a fraction to see if you were someone he knew. I read in his expressionless face such a look of undisguised sorrow that I wanted to run at and through him like a ghost-angel and turn around and find him back to the way he was. I also wanted to run away, to sob, to smash the room up.
Instead, I joined him for afternoon tea with a group of other residents, many of whom are from the dementia section. Ants is in the high care section but the dementia section is next door. I shared some chitchat and chocolate with the residents, carers and volunteers as I sat close to Anthony, who gripped my hand in his and who couldn’t stop looking at me. Then I helped him back to his room and settled him in (with the help of a walker contraption which he is now supposed to use instead of the walking stick).
We then had our usual discussion about coming home – him saying how he wanted to come home for the day/night, and me saying he had become too heavy for me, and him saying he could try harder etc. Then, just as I was about to begin yet another explanation as to the why of our predicament, Anthony began to yawn and yawn and yawn. Every time I reached a point of extreme eloquence he would yawn again. Finally, I said, “Am I boring you?” And he said, “You are a bit.”
I laughed all the way home!
So here is cheers; I have decided to have a glass of red wine.
jmgoyder 